The importance of health data continues to grow. More and more stakeholders recognise that we must all make better use of high-quality health data, in trustworthy ways. Health data has the potential to catalyse solutions for the urgent need to improve the quality of health, care pathways and services, advance research more rapidly and effectively. Moreover, health information can help to engage patients in self-care and shared decision-making.
This is the foundation on which i~HD was created and strengthens the case for the activities we have prioritised scaling up over the past year. During 2019 we have been increasingly active in synthesising the emerging good practices in reusing health data in GDPR compliant ways. We are supporting innovative European health-promoting projects funded by the IMI Innovative Medicines Initiative, Horizon 2020 and EIT Health through guidance and codes of practice for sharing and using health data for research and value-based care. We also deliver GDPR education through tutorials and workshop events for the health data industry. We have advanced our work on data quality assessment and begun to develop Data Quality Seals. We are promoting the adoption of interoperability standards, targeting this towards high-value data that deliver benefit to care and research, providing practical focal points around which stakeholders can engage to accelerate interoperability standards adoption.
An important part of what we do is to bring diverse health data stakeholders together to hear and learn from each other. We strive to create together the momentum to drive initiatives and co-create solutions that enable us all to improve the data we collect and our capability to combine and share that health data for societal good. We held our main annual conference “Joining the Dots” in Brussels in November 2019, as a partnership with several European projects, bringing them together and “Joining the Dots” between them along several vital lines such as high value data sets, multi-morbidity, patient empowerment, privacy protection and federated research infrastructures. We also ran streams in other major European conferences and gave presentations in many others.
We are delighted to announce that the i~HD team has grown over the past year, with new staff working in the Gent office and additional experts around Europe contributing to our fields of activity. We have been fortunate in winning a significantly increased grant income from diverse research and industry sources, and also grown our membership. We are especially pleased to welcome MedTech Europe, which broadens our industry sector representation. We have strengthened our collaboration with the European Patients’ Forum and the European Multiple Sclerosis Platform, enriching our much-valued patient inputs.
We have expanded considerably during 2019, and have recognised that it is important to better formalise our internal organisational quality processes. We have sharpened our vision and mission, which you can read on the next page, and we are in the process of drafting new internal policies and protocols so that we can apply next year as an ISO certification body. This will give added weight to the Quality Seals we have developed in the past and others that are in the pipeline. Our website will soon have a new look too!
So, we have started 2020 with a stronger in-house team and a fantastic network of European experts, a large portfolio of projects, a healthy income stream and an ambition to have even greater impact within our multi-stakeholder community on the success factors for scaling up innovation through health data.
Professor Dipak Kalra